Monday, November 26, 2012

Taylor Swift

Trent wanted everyone to know that Claire has been enjoying listening to Taylor Swift songs on his iPhone this weekend.  Seriously?  A 2 year old jamming out to Taylor Swift??  What is in store in the next few years......  :)  Are we going to have to be attending these concerts sooner than later?  Or worse - like Justin Bieber concerts?!?!?!

The Scott Family

Tuesday, November 20, 2012

Rash and cold update

The rash has seemed to fade some today.  When Claire woke up, she had a few more "dots" around her right eye.  I am sure she had more on her body but it was hard to tell.  They do not look as angry today and they don't seem to bother her or itch at all.  Her diaper rash got a lot worse today though. :(

The body rash, as it is fading, seems to be making those circle shapes.  It's not really a bulls eye, but it's almost like a ring worm.  Like a red outline of a circle where the inside of the circle is faded or skin color.  It's really weird.  The rash remains pretty flat and not raised.  I have tried Googling rashes a lot and still don't really see one that matches what Claire has.  She keeps saying "oww" like it hurts but I also don't know if that is just something she is saying as it is a new word. 

Claire still seems stuffy and is coughing a little.  She is off all antibiotics and breathing treatments.  She is still taking Zyrtec and Mucinex Cough.  Please pray she is well ASAP!!!  I don't want it to relapse.  Trent seems better today and I finally broke down and got antibiotic and steroid shots today. 

Thanks for all of the prayers for our family!

The Scott Family

Monday, November 19, 2012

Aannnnd now a rash

And the rash came today.  It was very little this morning - maybe 10 dots plus her ears.  Tonight, it's gone wild!!!  I got lots of good advice and opinions by posting on Facebook from friends.  I also sent pictures to Dr. Rachel for her advice.  She thinks it looks like hives probably from one of the antibiotics (more than likely the azithromyacin).  All I can say is I know how stressed I am about this whole sick episode.  I can only imagine how Claire feels.  :(

The Scott Family

Sick, sick baby

We almost made a trip to Duke yesterday morning.  I was really scared about Claire’s wellbeing.  She did the fast breathing all night Saturday night and slept til almost 8:15 am on Sunday.  When she woke up she was very lethargic, still breathing fast, and I could feel her heart pounding.  She was really hot and glassy-eyed.  Her skin was a weird color where it made her scars on her chest and stomach look really white.  I had not seen that look on her face since she was at Duke after her surgeries. 
I was really scared.  I knew Claire was in trouble some sort of way, just not sure how.  We gave her some fluids and a breathing treatment while we tried to decide what to do.  After that she seemed slightly better.  So we took it hour by hour.  As the day went on, Claire seemed to get a little better but still spent most of the day in my lap which is totally abnormal for our child.  This weekend was the most I have held her since she was in the NICU!  It’s so hard with a heart baby to know if something is going on with her heart or if it is something else.  You just cannot overlook anything. 
Claire’s color was really pale but her cheeks seemed to get pinker throughout the day.  By last night, she was smiling in the tub a little and laughing at me singing Itsy Bitsy Spider.  She has probably lost 3 or more pounds which on a 30 pound child is 10% of her body.  So it makes her look really small now.  Her size 5 diapers are basically falling off of her.  She looks so sick. 
We kept up with the breathing treatments and today is her last day of azithromycin.  I even did the breathing treatments to her while she slept during the night and this morning.  She still seems a little weak this morning, but when I dropped her off at my mom’s she was eating really well (raisins and doodles) and dancing to Baby Einstein. 
But I did notice that while changing her diaper this morning that she has these little red dots all over.  Not a whole lot but several on her legs, her belly, belly button, one on her chin, and then her ears are covered with them.  It’s weird!  I texted a picture to Dr. Rachel and also to the pediatrician.  The pediatrician seems to think that since they blanche when we press them, they are probably a viral “rash” that sometimes comes out after fever or viruses.  She said we may see more come and then they will go away.  So we will watch them too.
Hard to see on her ear in the picture.  They look pink but they are really red all around the outside of her ear.

It’s just been a long 3 almost 4 weeks.  Claire is exhausted but she is such a trooper.  Trent is finally feeling a little better but all the steroid shots he took are making his blood sugar way out of whack.  Me – I am still hacking my head off.  I took one of Claire’s breathing treatments this morning in hopes it might help me too. 
Thanks for all of the prayers.  Please keep them coming as we still don’t really know what Claire has/had and if it’s over or not. 
The Scott Family

Saturday, November 17, 2012

World Prematurity Day and the never ending cold

Today the world celebrates and recognizes World Prematurity Day.  We celebrate our little girl who was born too early at 29 weeks weighing 3 lbs 2 oz and only 16.25" long.  She had a rough start to life but she has sure made up for it these past 2 years!!!  Happy World Prematurity Day out there to all of our preemie friends - Aunt Sarah, Eliza, Remi, Jake, Parker, Chase, Leah, and many more!!

And this cold that we all have must be some mutant cold.  Seriously, Trent went back and got more shots, I went and got a z-pack of my own, and Claire was tachypnic all night last night so I laid awake all night listening to her breathe.  I don't freak out about much (well, depends on who you ask) but last night I was really worried.  Breathing fast may not mean a whole lot to many people, but the word tachypnea freaks out any preemie mom - especially a preemie heart mom. 

Thank God I was able to talk to Dr. Rachel last night and ask her opinion.  Why can't she just live here so she can be Claire's personal doctor?!?!  :)  She told me the "bad" signs to watch for such as really labored breathing where I could see Claire's lungs/ribs and flaring of her nares/nose.  Of course I couldn't really see any of that since she was sleeping but her breaths were short, fast, and shallow.  I start freaking out since Claire was also super clingy last night and basically just wanted me to hold her.  That is TOTALLY out of charachter for her.  So as I started worrying, Dr. Rachel talked me down and calmed me down. 

She said a lot of times with viral pneumonia and infection in the lungs, tachypnea happens.  So I am praying that's all it is and nothing heart related.  You can never be too cautious.  I will watch her this morning when she gets up and see how it goes.

Please continue to pray for healing and health for our family!  This cold/virus is crazy!

The Scott Family

Thursday, November 15, 2012

ClawDia Kitty

Well, the past 3 weeks have been full of snot, coughing, congestion, fever, up all night, cold medicine, antibiotics, doctors visits, more antibiotics, shots, Vicks, and now a new addition - ClawDia Kitty.  I will explain more about her in a minute.

About 3 weeks ago before the Big Game Hunt, Claire was starting to get congested and even ran a fever.  I called the doctor that weekend and pretty much begged for advice over the phone instead of bringing Claire in since she is mortified of the doctor's office.  The nurse told me to give her Zyrtec and Mucinex Cough and so I did.  She stayed congested the next week but didn't have any runny nose or anything and the fever went away.  That next weekend, she wasn't any better. I called again and the nurse said to keep doing what we were doing and hopefully it would go away soon. 

That following week Claire was up for 2 hours almost every night hacking her head off.  Nothing was helping.  That led us to last weekend. Saturday morning Claire woke up with terrible snot running out of her nose and a wet, nasty cough.  I decided it was time to brave the trip to the doctor.  We went in and sure enough, Claire had a sinus infection and ear infection.  They put her on Augmentin (supposed to be top of the line antibiotic) and told us to continue the OTC meds. 

All this past week we have not seen ANY improvement on the antibiotic.  Tuesday, Claire got sent home from preschool with a low grade fever.  I called the nurse again and we were told to wait out the antibiotic.  I called again Wednesday because she was no better, but the fever was gone.  Wait another few days.  I asked if we could switch meds because she was still not any better.  No switching meds.  

So after we were up for 2 hours last night with Claire unable to breathe, coughing continuously, and breathing fast, and waking up with a low grade fever, we went back to the doctor today.  The doctor said she didn't think it was RSV which is good.  But it could possibly be a viral type cold that really is not responding to antibiotics.  Her ears looked better but still had fluid on them.  The doctor decided to add another antibiotic (Azythromycin sp?) on top of the Augmentin.  She said she thought Claire may have a little bit of pneumonia, but not enough to hospitalize her (thank God!!!). 

I have stopped by the pharmacy enough this past week they know who I am when I walk in.  The pharmacist even said today that he thought Claire would end up being an Olympic gymnast when she got older because she has such strength and determination and has been so strong through everything she endures.....

The doctor also prescribed breathing treatments.  Hence, ClawDia Kitty:

ClawDia Kitty is our newest addition - she is Claire's nebulizer!  I think it's cute that they make them like this for kids.  Claire loves ClawDia as long as she is not on.  Tonight to give her the first treatment, we had to put ClawDia outside and feed the tubing under the door to Claire's highchair.  She freaked out of course with the mist/smoke blowing in her face.  But I pulled out the DVD player and that seemed to help some.  I am praying with the new meds and the breathing treatments, this cold will let loose it's major hold on her.   She had even lost a pound since she was seen on Saturday.  :(

Of course, Claire DID NOT put the mask on.  I was not even dumb enough to think she might.  But we did hold the tubing by her face so as she was crying, I am sure she sucked some of the medicine up.  I think it's Albuterol that is in her nebulizer. 

And on top of Claire being sick, she so graciously has shared it with me and Trent.  Trent is so sick he has already been to the doctor twice this week and has received I think 8 Rocephin shots, 4 steroid shots, is taking 40 mg of Prednizone a day, and 2 z-pack pills a day for the next week or 2.  Plus ear drops.  I am trying to survive on DayQuil and NyQuil.  But of course with my stress, my face has  broken out in that weird bumpy rash again like it did 3 weeks ago.  It's so strange and makes my face feel weird and itchy and burning.  Ugh.  If Trent and Claire would get better, I know I would feel better. 

So that's what we have been up to lately.  Not much fun.  Please pray that Claire is on the mend.  I know how I feel, I cannot imagine how she feels. 

The Scott Family

Saturday, November 10, 2012


Sorry it's been so long since I last blogged.  It's just been really busy lately!  Plus Claire's had a cold for 2 weeks so I haven't really had a lot to blog about.

This week we went to the annual spaghetti supper at Clarie's preschool. They decorate with all of the kids' artwork.  Here are a few shots of Claire's artwork.  So cute!!

The Scott Family